Bye, Mom. I Wish It Had Gone Differently for Us.
A story about a Filipino middle class family in America, the health care system, and an honest look at the Lord’s work.
On a warm Saturday in May of this year, the day before Mother’s Day, I visited Mom at the Monte Vista Healthcare Center in Duarte, California, about twenty-two miles northeast of downtown Los Angeles.
Four months prior, on January 19, six days before her 76th birthday, mom suffered a massive stroke rendering her virtually unresponsive. Despite emergency brain surgery to relieve pressure from the bleeding in her brain, she never recovered. She could breathe on her own but that was it. Her right side was completely flaccid. She couldn’t speak. She couldn’t even communicate through hand or facial gestures. She couldn’t swallow. She was being fed through a tube in her stomach.
This was only my third in-person contact I’d had with Mom in four months. Due to the COVID-19 pandemic, Monte Vista was only allowing one in-person visit once a month and other family and friends also wanted to visit her, so I wanted to give them their time as well. Most of my visits were FaceTime phone visits through a screen that wasn’t even set properly for either of us to see each other very well. Nursing homes for the lower middle class aren’t inclined toward Michelin star restaurant quality service, as you might imagine.
Not that I was visiting her regularly when she was healthy, mind you. We hadn’t been getting along for years and distance from each other was just easier on the both of us. We triggered each other too easily. My family had a distinct way of triggering my inner child, which would then exacerbate my depression and suicidal ideation. Staying away was actually a survival move.
We set up our in-person visit in the building’s courtyard to give her a bit of sunshine and a break from the stagnant nursing home air. Mom was wheeled out to me, but before the orderly left us, she stressed, like a nonplussed prison guard at visiting hours, “you can only visit for an hour. It’s COVID-19 policy, and all.” I pulled up my chair as close to Mom as possible, and I took her hand. She merely offered a blank stare. I could’ve been anyone, really. This was nothing new, I suppose. For a few decades we were estranged and disconnected from each other, perhaps a long, drawn-out dress rehearsal to prepare me for these final moments.
I had never sung with my mom in my entire life, much less sung to her an inch from her face as two passionate lovers might do.
Since the end of February, I had already suspected my mom was no longer my mom, but on this May day before Mother’s Day, I wanted to go all in for one last time, to see if I could catch in her a hint of a spark.
I looked in her eyes, and played a song from my phone, singing along to her a U2 song that Bono wrote in 2004 when his dad died. It’s called Sometimes You Can’t Make It On Your Own:
We fight all the time
You and I, that’s alright
We’re the same soul
I don’t need, I don’t need to hear you say
That if we weren’t so alike
You’d like me a whole lot more
Even as her first born, I was never close with my mom. We were frequently at odds. As the song goes, it perfectly describes our intra-dynamics: both scarred humans with massive abandonment and inner child issues passed on from generation, to generation, to generation like a debilitating chronic virus.
My mom didn’t listen to a lot of music in her whole life, the way music is my church, except for stuff from her generation like Engelbert Humperdinck, Connie Francis or Doris Day. There probably wasn’t a lot of music in the poor town of Sarrat, where she grew up in the Philippines. She had immigrated to New York City in 1967, smack in the middle of Beatlemania hitting American shores, but she wasn’t interested in frivolous rock n’ roll. She was just happy to start a new life in America. Her focus was shelter, food, making a humble living and creating a family, all of it to plug the gap in her gaping heart hole. I recall…I was maybe eight years old at the time, the one time she had sung some off-key rendition of Qué Sera Sera, but that was a rare moment. It was more than just her singing voice that she didn’t like. She just didn’t know how to fully access her soul enough to sing. We were so opposite in that way.
As such, I had never sung with my mom in my entire life, much less sung to her an inch from her face as two passionate lovers might do. So along with the vitamins from the sunlight splashing gently on my mom’s face, if my mom’s soul was still intact, surely she would be moved in some incremental way. I had known for months that the window to her recovery had since closed months ago but I was always open to miracles, especially by the church of music.
But honestly, she had no connection to this moment. An absolutely blank expression about what was happening. She held my hand, but only out of reflex like a baby holds on to your finger or to a stick.
I suddenly realized that she was never going to recover. THIS was my goodbye. I started crying. I had been hoping that I’d get to know Mom a little better during this next decade. I had hoped that Mom would get another chance to dramatically change the way she approached things. But it was too late. I sang all the way through my tears.
When that song was over, the next song I sang was Gale Song by the Lumineers:
I don’t want to go
But it’s time to leave
You’ll be on my mind, my destiny
And I won’t fight in vain
I’ll love you just the same
I sang Gale Song to my then girlfriend Sarah all throughout 2020, the year of the lockdown (and with whom I acquired my love of singing to someone) but recently it became a break-up song and right here, right now, it became a goodbye song. The tears started flowing. I held my mom’s hand tighter, more connected than I had ever held her hand in my entire fifty-two years. She didn’t reciprocate. She couldn’t. Not now, not before the stroke, not ever without her guard up.
More songs, more tears. I kept singing until the orderly came up to tell me that visiting time was over. Mom was wheeled back into her room and I hopped in my car, wiped my eyes dry, and merged back into the rest of my life.
For a month and change since the day I sang to Mom, everyone in Mom’s circles — mostly devout Christians from her church — had been saying prayers, including the plethora of right-on-cue obligatory Facebook thoughts and prayers summoning for divine intervention. I’d read their posts about visiting Mom or seeing her on FaceTime, declaring with blind hope, “she was getting better!” upon seeing Mom dart her eyes or move her blanket involuntarily.
I didn’t want to be annoyed but the prayers were pissing me off. Before I get into this any further, allow me to offer some backstory to provide context.
Back in January, Dr. Ciao, the neurologist from Garfield Medical Center in Monterey Park, was overseeing my mom’s recovery. The information about how mom was getting handled was not being passed on from nurse to nurse to nurse. Time was ticking away. Cumulatively, it felt like too many hours not attending to the brain… the four hours we waited for her to get the third CT test, the four hours it took for Dr. Ciao to evaluate the results, the twelve hours until she finally went under the knife. In merely these sequence of events, that was twenty plus hours that mom’s brain wasn’t attended to. How much of that time was health-threatening vital? No idea.
He told me that upon a third CT scan, the bleeding was increasing in her brain. I said, “By how much is it increasing?” He babbled on for a little, and then said, “Four to five centimeters.”
“If the bleeding is increasing,” I said, “it’s got to be more than five centimeters because that’s what it was in the second test.” Sensing he was being called out, Dr. Ciao started babbling on to try to distract me. I said, “what is the measurement of the bleeding, specifically?”
HE DID NOT KNOW THE ANSWER. To obscure that fact, he said, “You’re giving me attitude. I’m just going to transfer her right now,” basically threatening me that he was just going to dump her from his responsibility. After I told him that I would call his administrator, like a petulant child, he said, “fine, you go do that.” Then he hung up on me.
The next day, Dr. Ciao requested a transfer and we got Dr. Chen from the more renowned USC-Keck Hospital. It was like being on a different planet. Dr. Chen asked detailed and essential questions about her history that I hadn’t been asked when she was under Garfield Hospital’s care. I found it so strange that as exceptional as this care was, that this wasn’t the minimum standard to expect. Actually, not strange, because I’ve experienced lackadaisical medical care too often. Maybe a more accurate word is astonished, as in, I find it astonishing that less than this kind of care and professionalism is even allowed to exist in the field of saving lives.
If my mom or my dad were in charge of handling this situation, they would have acquiesced to Dr. Ciao’s bizarre bedside manners. This is commonly the mentality of the lower middle class Filipino family in America. They settle for what’s in front of them, they drink the kool-aid, they don’t put up much of a fight. I also wanted to fit in, and I had my own people-pleasing, co-dependent tendencies, but I often kicked and screamed to push for more than the minimum. I was always more inclined to look under the stone, to jump into the rabbit hole. My parents often scolded me for my precociousness: ”YOU ALWAYS WANT YOUR WAY. YOU THINK YOU’RE SO SMART.” My fighting spirit was alien to my family.
So when the prayer warriors chalked up the victory of finding the new neurologist to God directly intervening, I started to lose my shit. I acted of my own volition. God did not possess my body and compel me to act. The prayers were just passive check-the-box action on everyone else’s part.
I don’t presume myself worthy of challenging the power of prayer, but truth be told, my mom’s current state didn’t validate to me that any of the hundreds of prayers for my mom to get better actually worked. Was it possible that there were more prayers that I wasn’t aware of that pointed toward other intentions for my mom that canceled out the “pray for a healthy recovery” prayers? Maybe there was another plan God was implementing to which we mere humans were not privy?
How much health-critical time had withered away as Mom was lying in bed helplessly waiting for God to answer everyone’s prayers, along with her brain withering away into an irreversible state?
I was grateful for all the thoughts and prayers, but we sure could’ve used a couple more experienced problem solvers. There were so many moving parts to look after. Mom needed to re-learn how to swallow, how to speak, how to do basic motor skills. Neither Mom’s primary doctor nor the rest of the medical rehab team did anything beyond garden variety post-stroke therapy. One can’t expect world class treatment from a pool of doctors and medical staff who service the lower middle class, so it wasn’t going to be enough to merely check in with the doctors regularly. Precise vigilance was needed, the hard questions needed to be asked, the ability to assess whether the doctors’ answers were full and complete was needed as the window of recovery was rapidly closing.
There are so many new discoveries about the brain and neuroscience; information that is out there that makes today’s general medical industry approach outdated and not very visionary. It’s kind of like, if you’ve used the same meat thermometer your entire life for making barbeque; there are digital heat thermometers that five-star restaurants use now that really make a huge difference. On the other hand, if you’ve never used a meat thermometer before, even if you think you’re a barbecue master, well, then your skills aren’t actually top notch; that’s how I feel about some of the doctors too — the stroke treatment version of “What do you mean you’ve never used a meat thermometer?”
The family dynamics were coming into play front and center, not to mention the feelings I was feeling about my own experiences with my mom. Stuff just wasn’t getting done with a sense of urgency the way it needed to and it ate at me.
Then three weeks after Mom’s brain surgery, I discovered that my mom had changed the executor of the power of attorney from me to my sister two years ago. My sister is not someone who handles complex problems well. It’s not a reflection of her intelligence. She herself has said repeatedly, “I don’t like to have to think.” She doesn’t even watch movies with complex plots or themes. Her problem-solving technique is to let Jesus take the wheel.
She didn’t want me involved in Mom’s care because my presence was putting pressure on her to act with precision. She didn’t like pressure. Never has. In my mom’s situation, we needed more than just garden-variety health care. She needed a tenacious and relentless advocate.
The reality of America, possibly globally, is that if you are in the middle class, or in Mom’s case, lower middle class (relative to all of America), you simply don’t get elite care. Mid-level doctors are only able to work in the middle class community because they aren’t good enough to work at the highest levels. No different than any other profession. You get what you can afford, and there just aren’t enough doctors with the best skills who aren’t interested in the money; no different than if you were Kobe Bryant, you’re not playing for the worst team in the NBA, much less a D league team.
Kudos to my sister who had all the right intentions to take charge and be the leader, but this was NOT the learning opportunity for her to build character. Asking the Lord for strength and wisdom and rallying the prayer warriors was simply not going to be enough.This was my mom’s life we were dealing with here. (How she handled my mom’s finances, which had some tinges of embezzlement, or how my mom’s trust lawyer unprofessionally fanned the flames between my sister and I, were other factors in this complex situation beyond the scope of this story.)
One thing I experience regularly when I interact with a mid-level doctor or nurse — so many of them are so defensive when you ask them questions. They can feel that you are able to pick apart the story they tell you. In my experiences, they tended to pull the “I’m the Doctor” card to shut you up. It’s just a job to them and they give you basically “the dog ate my homework” excuses. I can’t help but think that being Filipino enabled them because as a culture, we can tend to be accomodating to a fault.
At the highest level of doctor care, in my experiences, they’re happy to answer all your questions. They’re okay with being honest that they don’t know everything. They’re okay that things aren’t clear to you and they are happy to explain. They have a plan to make it right because they transcend beyond just doing the job.
Years ago, I utilized a doctor who didn’t accept insurance. When I did a physical, it cost me $1000 out of pocket. But it was well worth it. She was incredibly thorough and checked every detail of my system; when she got the blood test results, she called me and we spent an entire hour going over every detail and she took the time to tell me exactly all the supplements or all the actions I needed to take. It was an eye-opener.
In the movie business, working with many a movie star in my field, I’ve seen that when they get sick, the doctor comes IMMEDIATELY. They do everything in their power to get the actor healthy. It’s really impressive the level of care one can get.
Anyway, the point is, we can have faith in the nursing and the doctor team but we can’t just leave them to take care of things. WE HAVE TO DO THE WORK.
But I had to let it go and let my sister take the lead. I had to just trust God to do the work. I’m totally open to the possibilities and notions of mysterious ways, but over the months, I just didn’t see these notions materialize. My mom was in the same state since the end of January and after seven months, the bills sure were piling up. Watching the train wreck was incredibly tough to watch.
You know, for someone devoted to God all her life, mom sure didn’t get a lot of divine kindness coming her way. Not even out of the womb. She was a poor illegitimate child from Sarrat in the northern end of the Philippines, shunned by her rich father and left by her mother who was forced to go to the big city of Manila to make money, leaving my mom to be raised by her grandmother. My mom carried a massive chip on her shoulder her whole life, so she sought the good Lord for salvation and healing.
Even after God gave her the love she had finally been looking for, he took it away just ten years later, when Pedro, her second husband, a high school sweetheart and the truest love of her life, died suddenly in the Philippines on a routine business trip while she was back here in California. She never got to say goodbye to him. (I didn’t get to say goodbye to my mom either — how’s that for a fucked up John Steinbeck-ian twist of irony?)
But mom kept coming to church and kept praying, this time asking to meet her love in Heaven. As she waited for her prayers to be answered during the last twenty years, she became massively depressed, numbing herself with travel and friends from the church. Ironically, the only time she finally found a bit of peace was when God shut her up for good after her stroke.
The prayer warriors saw mom’s stroke as a blessing in that her prayers to finally meet Pedro in heaven were finally going to be answered, but I am having incredible difficulty comprehending the notion that as a final bow on this blessing, the peace she earned came with a final price tag of being as alive as a houseplant. Maybe more like being buried alive.
The entire experience accurately illustrated the dynamics of this particular Filipino family in America. We fell apart during this crisis. I tried to galvanize them, to rally them, but we were just never equipped to deal with crises, me included. I was not my best self.
Seven months after her stroke, trapped in a body that couldn’t swallow, couldn’t emote, couldn’t express anymore, left in a hospital that gave her average attention, left alone for most of her last months because no one could visit regularly, Mom finally passed at 10 PM on July 27th.
I’m not dealing with my mom’s passing very well. I’m feeling a bit raw lately from all the loss, purging and so many major changes, holistically so, all converging in such an already strange year in itself that 2021 is. When my mom suffered her stroke, I was living with my girlfriend Sarah, in the midst of starting my own business and doing substantial DNA restructuring to build my authentic self, which, as a fifty-two year old male, has taken a lot of work to change my old ways. By the time Mother’s Day came around, Sarah broke up with me — my only real family — and I was left by myself to process all of it. My abandonment issues are acting up in strange ways. I’m not my best self sometimes. I smashed my racket on the tennis court the other day. I’ve never done that in my entire life.
Many people have been sending me Facebook messages with the obligatory “sending you prayers,” and “sorry for your loss.” It’s less about the loss for me. The entire experience accurately illustrated the dynamics of this particular Filipino family in America. We fell apart during this crisis. I tried to galvanize them, to rally them, but we were just never equipped to deal with crises, myself included.
Secretly, there was a part of me that stood idly by to see if the great experiment of God doing the work would materialize into my mom recovering. I also wanted my mom to be accountable for her decision to have my sister be the executor of the power of attorney. This is what she wanted, I reasoned, so I let her have at it.
Mom’s celebration of life is this Saturday August 28th. I don’t want to go. I won’t be able to handle all the cognitive dissonance of the prayer warriors getting together talking about how this was God’s will and it was all for the best. I’ll want to give a speech about how this whole thing was mishandled and I’ll just want to go toe to toe with God in front of everyone.
Besides, I had my peace with mom the day before Mother’s Day. Before I left, I hugged my mom, held her head in my hand, I cried some more for the both of us, and then looked her in the eyes. “Bye, Mom,” I said. “I wish it had gone differently for us. For you, especially. You didn’t deserve this. No one does.” My mom and I weren’t ever very close. Until that day.
She had no idea what I said.
